Christine's Story

My name is Christine. I am new to this site. I am kind of new to the whole Cushings thing. About 5 years ago the primary care phsician that I had did some blood test's because I had gained some weight in a very short period of time. She found that my cortisol level was slightly elevated so she had me do the 24 hour urine collection. When the test results came back she set up an appointment with an endrocrinologist.

When I went to him he took one look at the records my primary care physician sent over and told my husband and myself that the results were high but not high enough for his standards. Then he said that my PCP and myself "were waisting his time". That was it no other test's or anything.

I went back to my PCP and she told me that it was probably PCOS. Keep in mind this was back in the August of 2002. So more test's insued. By March of 2003, I found out that I did not have PCOS.

At that point I was so frustrated with all of the tests, gaining weight, headaches, and feeling sick, and being tired all the time from either not sleeping or sleeping to much. (I didn't know you could do that) My blood pressure was sky high and I have NEVER in my life had a problem with that. I was (again) borderline type 2 Diabetic. Oh yeah and did I mention I went from 165 pounds to 270 pounds in a little over 6 months.

Not getting any answers for anything, I finally switched doctors. (which I have to say is probably one of the biggest mistakes I could have ever made in my life!!!) He told my (even though I had been through all of the tests and everything was in my records) that he thought that I had PCOS. So for a little over a year I went on feeling the same way I described before. Tired, gaining weight, sick all the time. Now depression was starting to set in. I was not feeling well AT ALL for about three months and was seeing my doctor at least once a week telling him every time that I saw him that something was wrong other then what we already knew or should I say didn't know.

He kept telling me that it was, because I was just tired, because I was not sleeping enough, and needed to lose weight. But no matter what I did I couldn't lose the weight. I tried ALL of the diet's Weight Watcher, Attkins, South Beach all of them!! I was having problems even standing because the weight I had gained was hurting my ankles,knees,and back so exercise was out of the question. I was 34 at that time.

Well the timeline is now April 2004 and like I said I had been telling my SO CALLED DOCTOR something was wrong. On April 9th 2004 I couldn't sleep agian even though I was exhausted.I was on my computer at 3:00 in the morning and began having a problem breathing then I started having a pressure in my chest. My husband rushed me to the hospital and low and behold I was having a heart attack. I WAS 34.

My cardiologist went through my medical records and saw in them that I had been tested for Cushings. He decided that I should go and see another Endocrinologist. Which brings us to today.

I have been seeing this Endrcrinologist since May 2004 I have had SEVERAL blood tests and 24 hour urine collection tests. I have had a CAT scan and 2 MRI's.
When the results came back he told me although my test levels are high and they found a lesion on the MRI of my pituitary gland he still can't say either way if I have Cushings or not. Now he wants me to go for more tests. I live in Maine and the more "sophisticated" test's that he would like me to have done are only done in Boston Mass. What more tests need to be done? I don't think I have any more blood to give.

I am at the point where I am about to give up!! I think I read somewhere if left untreated I could die. I have 2 children and a husband to think about but it has been five years. I don't know how much longer I can hold on to my sanity.

I am very confused. I'm still NOT SURE what Cushings is. When I started seeing this endrocrinologist he gave me some print outs from a website but they were not in laymens terms so I have no idea what half of it means. I have almost every symptom on every checklist I have seen. I really do not know if this is life threatening or not. I would like to know if Cushings can lead to more serious disease's. One big question I have is could Cushings have caused me to have my heart attack because it has been untreated for so long. (If I do have it.)

I just need some advise and support from a person or people that understand what it's like to be going through all of this. Not that I don't have alot of support from my husband and two boys. But they don't know what it's like to look in the mirror and see what I see. As a matter of fact I won't look in the mirror anymore. If anyone reads this and help me out I would be forever greatful. Please please respond.